我们如何将意义变成有意义的利益? 来自生活经验的观点
Russ Paulsen1, Carla DeMuro Romano2, Terry Frangiosa3
1UsAgainstAlzheimer's Washington District of Columbia USA.
Alzheimer's & dementia (New York, N. Y.)
|May 16, 2025
概括
在阿尔茨海默病 (AD) 中获得有意义的益处应该优先考虑患者和护理合作伙伴的观点. 专注于症状,功能和日常活动的改善,正如阿尔茨海默病患者所指出的那样,为治疗成功提供了更相关的衡量标准.
科学领域:
- 神经科学是一个神经科学.
- 老年学是一门学科.
- 临床试验 临床试验
背景情况:
- 在阿尔茨海默病 (AD) 中的有意义的益处通常是由临床医生或护理伙伴的印象来定义的,可能会忽视患有AD的人的观点 (PLWAD).
- 现有的临床结果评估可能无法充分捕捉PLWAD的经验和优先事项.
研究的目的:
- 开发一个框架来理解AD的有意义的益处,并纳入PLWAD及其护理合作伙伴的实践经验.
- 确定关键的概念和领域,对PLWAD和AD连续性的护理合作伙伴来说很重要.
主要方法:
- 利用了PLWAD和护理合作伙伴参与的"最重要" (WMM) 研究计划中的采访和调查.
- 基于PLWAD和护理合作伙伴的投入,开发了一个概念模型,涵盖六个领域的50个概念.
主要成果:
- 该WMM概念模型确定了六个关键领域:社会生活/活动,思维处理,沟通,日常活动,情绪/情绪和一般独立.
- 在这些已识别的概念中,PLWAD和护理合作伙伴将有意义的益处定义为症状出现,发展或恶化的时间增加.
结论:
- 以患者为中心的方法对于在AD临床试验和研究中定义有意义的益处至关重要.
- 将PLWAD和护理合作伙伴的观点纳入结果评估中,对于捕捉阿尔茨海默病患者真正关心的事情至关重要.
关键词:
阿尔茨海默病的疾病阿尔茨海默病的疾病.护理合作伙伴 护理合作伙伴痴呆症 痴呆症是一种痴呆症.有意义的好处有意义的好处.轻度的认知障碍 轻度的认知障碍最小的临床重要差异.患者的体验 患者的体验从患者的角度来看.时间到恶化的时间.更多相关视频
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